Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Sunday, November 9, 2014

Too Nice?

One of the very few things I do not like about my little rental home is the lack of a washing machine and dryer. I was initially worried. Last academic year when the Red Roof Inn was my home away from home I used a laundromat in East Syracuse. I was not impressed. The cleanliness was far from ideal and the machines were ancient. However the same company has a laundromat in my town. Thankfully the local laundromat is exceptionally clean and, better yet, has free wifi. I do my laundry once a week and as winter sets in will likely do laundry twice a week. I do not mind this one iota however I am careful when I do laundry. Prior to day light savings, I did laundry just before or after sunrise on Sunday. I rarely interacted with others as I was done by 7AM--and yes this was design. I continue to think of times the laundromat will be empty. Given the little college that is in town, night time treks are a bad idea. I have no interest in interacting with college students. I love college students but that love is restricted to the classroom where they are on their best behavior. Post 7AM mornings on the weekend are a bad idea--especially on Sunday as the holy rollers are likely to want to pray for me. Being an anonymous cripple takes some advanced planning, flexibility, and creativity. I have been very lucky to date. I have come across a few college students who had inhaled too much, a few men my age who were very drunk, one parent that was dreadful, and more than a few people who looked like they had a hard time scratching enough cash together to do laundry. There many people down on their luck in the Syracuse area. The poor abound in fact.

My laundry luck ran out yesterday afternoon. I had a lot of laundry--much more than usual. I put my laundry basket on my lap and it is was over flowing and stinky. Dirty clothes and towels were piled up to my neck. I can manage the double doors but it is a somewhat slower process than normal. As I get through the first set of doors a man is standing in my way in an effort to hold open the door. His timing was bad as I was half way through doorway and he really was simply acting as an obstacle. Of course this being central New York the man and his wife who prompted him to "help" is overly friendly. I politely ask that he move aside. I look at him and then his wife sitting at a nearby table. I am screwed. I have encountered Mr. & Mrs. Too Friendly and Eager to Help. I take my dirty clothes to the most distant machine and I am asked "Can I help you put the laundry in the machine?" I politely say "no", being sure to use a neutral tone and not respond with a thank you. I proceed to load the machine and I am then asked "May I help you put the money in the coin slot?" Again I reply with a flat no with the thank you absent. This exchange of questions plays out not just once but twice as I used two washing machines. I do my level best to ignore the couple who watched me like hawks hunting while riding the thermal winds. So much for a relaxing hour. As expected as the machines finish the wash cycle I am subjected to the duplicated offers of help. "Do I need help with the laundry cart? Do I need help loading the dryer? Do I need help putting the coins in the slot? Do I need help folding my clothes? Do I need help getting to the car? Do I need help with the doors?" Each and every answer was met with a simple no. No was the only word I spoke. At no point did they get the obvious message. I do not need nor do I want help. I do not want to engage and by gosh they were desperate to engage.

I suspect every person with a disability has been accosted by such do gooders. Such do gooders are not being helpful at all. In fact they have no interest in helping. What such do gooders are really doing is asserting their social and physical superiority. These social interactions are tiresome. Do not misunderstand me. I do not mind helping others and once in a while I appreciate some help. But the help I accept is based on equality and a sincere offer. I often hold doors open when it is raining. I appreciate it when a person offers to close my car door on a rainy day. I was not being offered help at the laundromat. The help the couple wanted to deliver came with certain expectations. Help was based on the assumption I was not competent. I was a dependent and inferior human being in need of charity. Once help was accepted my life was an open book for them to question. I have had this experience thousands of times and in every state of the nation. It pissed me off 38 years ago when I was first paralyzed and it pisses me off today. The only difference is I have the social skills to cut people off from asking all the intrusive and rude questions they are so eager to ask. Believe me, this couple was desperate to learn facts they would not dream of asking a person who did not use a wheelchair.

The exchange described above made me realize the hardest part of living in the Syracuse area is getting accustom to interacting with overly friendly people. I am a New York City kind of guy. I do my best to never make eye contact. I move fast and keep my eyes directed forward and down. I do not stop if humanly possible. I am a point A to point B kind of person. I am gruff and quick to cut someone off. When going up a curb cut I pick up a lot of speed and assume the person standing in my way is going to move once they get the idea I am not even thinking about slowing down. News flash to bipedal readers: lateral movement using a wheelchair is not possible. None of this goes over in certain areas of Syracuse. I cannot make it across campus with my lab Kate without an undergraduate saying something to me about the dog she or he left behind. To not engage in a brief conversation would be deemed rude. At Wegmans. the best super market in the world, employees and customers are routinely nice. I need to move much slower than I want to duplicate a typical bipedal pace. When I eat out at a restaurant I am usually asked "Where would you like to sit?" In New York City when I go a restaurant I am directed to the cripple table. The one table, usually the worst table in the house, is where all wheelchair users sit. This is not subtle and more than once I have left a New York City restaurant in disgust.

The above may sound like minor social differences but they are not. The cultural mind set in Central New York is different. I have to think differently every day. This has been by far the hardest adjustment to living out side the New York City bubble. Truth be told I miss New York City a lot. I want to be an anonymous human being in a crowded deli like Zabars; elbows out and parrying with little old ladies who use shopping carts as weapons. I want good rye bread still hot from the oven. I want New York City pizza. I want to wonder around the American Museum of Natural and Metropolitan Museum of Art. I want to ride my bike down the West Side bike trail. I want to people watch on 5th avenue as masters of the universe speed by with a cell phone surgically attached to their ear--the men in expensive business suits and women in power heels and skirts. I want to use the reading room at Columbia University Butler library. I want the hard edge of life. I like that toughness. Raw emotion instead of formulaic politeness. Ah, the thoughts that pass through your mind on a Sunday when you are vacuuming and mopping the kitchen floor and bathroom. Truth be told: I lead a solitary life I never expected and I often think of the title of Harriett McBryde Johnson's wonderful memoir Too Late to Die Young. I never imagined the life I have led and look at the sunrise and wonder daily how the hell did I end up here. Life is indeed an eternal mystery.

6 comments:

Hahaha never heard it out better - "The cripple table" too often near the toilets! I remember Don asking in one restaurant if they had any cans in the kitchen and he talked them into putting a can under the legs of the table we wanted to sit at - where the window was - so he could get under - we had to be careful not to bump or lean on it - and they were fine with it - was a while ago. We used to hate someone trying to help me get the chair up the gutter...it had a bar on the back and I could get my foot on it and tilt the front wheels up and away we'd go - but some people would forcibly try and get the other side which made it unstable.Because we lived in a big country town - many shopkeepers got to know Don by sight and most were pretty good if it seemed he might pass out (BP issues) he knew the ones to go into - they'd leave him alone till he recovered or till I found him. One time one of those helicopter mothers decided to educate her little bastard of a kid using Don and the chair which the little boy proceeded to think was his toy - he grabbed the controls - in our town strangely there seemed to be quite a few people who had to use wheelchairs and the town was relatively accessible - and I know what you mean about the holy rollers wanting to pray over you - as always you make such good common sense and thats all it really is.

Got to love how people assume that just because you are in a wheelchair or using a walker, you need help.

I have co-workers who are either disabled (walkers) or in a wheelchair, and I wouldn't dream of being that intrusive with them. If I happen to be going into the same elevator as them, I'll hold the door open for them and press the button as a simply gesture of common courtesy.

If they need help, they will ask. If I offer out of common courtesy and I'm politely declined, I leave it at that.

I'm often the same way myself (I have CMT, which for the most part resides in my hands), in that if I need help, I'll ask. If my co-workers offer, I'll either polite accept or politely decline, and no one is offended afterwards.

It's the same way here in the South. Some people are just dying to help you in any small way. (So much so that you can almost see the overwhelming desire to be "helpful" coming off them in waves.) I accept such from small children, but no, this is the adults we're talking about. Lately though, I have noticed more and more that people will ask "What can I do to help?"

You're right, Too Late to Die Young is a wonderful book.Helpful people can be very annoying. I use a cane due to a spinal cord injury, and I walk very slowly, with a major limp. Once, when I was walking in the woods over a plank bridge, minding my own business, in no danger of falling, a man came up behind me and grabbed me around the waist, saying, 'I've got you, ma'am!" I told him to take his hands off me. It's unbelieveble how people behave sometimes.

I like to remind folks that there were a great many disabled folks killed in Germany during the '30's and '40's. Anyway, I woke up before 4:30 a.m. a couple of times in the past week with ah-ha moments. One of those was a partial explanation of my profound seasonal loneliness. I have a great family, splendid students, and fine friends and often wonder why I feel bereft this time of year.Then I remembered how I felt going home to my biological family just before Christmas, after 3.5 months in hospital re Polio. My body and my psyche were in tatters. My family home was a lonely, violent place, where there was also sometimes love. Confusing at best, and terrifying at worst, not unlike Polio and the iron lung. At 8 years old, I just could not imagine how to go forward. I have returned to those feelings each and every year since. Most people, including therapists and physicians, just can't possibly get it.